Biomarkers – Blood Work for TBI

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Scientists are looking to biomarkers, or biological indicators, in the blood to help them differentiate between brain injuries of different severities. For example, there may be an increase of a specific biomarker in the blood of a patient with a severe injury that wouldn’t be present in a patient with a mild injury. When doctors are better able to determine the severity of an injury, they can make sure patients get the right care at the right time, and that could make a big improvement in their prognoses.

Some of the biomarkers used are the following:

•Known as Banyan BTI (Brain Trauma Indicator), the new test measures levels of two protein biomarkers — ubiquitin carboxy-terminal hydrolase-L1 and glial fibrillary acidic protein — that are released from the brain into blood within 12 hours of head injury.

The Brain Trauma Indicator blood test the levels of two proteins, UCH-L1 and GFAP. Upon brain injury, these proteins are released from the brain into the blood. If found at elevated levels, brain damage, with intracranial lesions, normally otherwise only visible on a CT scan, is suggested. Levels of these blood proteins after mTBI can help predict which patients may have intracranial lesions visible by CT scan and which won’t.

To give approval, FDA used data from a clinical study of 1,947 individual blood samples from adults with suspected TBI and compared blood test results with CT scan results. How did the blood test perform? It was able to predict the presence of intracranial lesions on a CT scan 97.5 percent of the time and those who did not have intracranial lesions on a CT scan 99.6 percent of the time.

•Levels of one protein, called brain-derived neurotrophic factor (BDNF), taken within 24 hours of someone’s head injury, could predict the severity of a TBI and how a patient would fare, they found.

While healthy people averaged 60 nanograms per milliliter of BDNF in their bloodstreams, patients with brain injuries had less than one-third of that amount, averaging less than 20 nanograms per milliliter, and those with the most severe TBIs had even lower levels, around 4 nanograms per milliliter. Moreover, patients with high levels of BDNF had mostly recovered from their injuries six months later. But in patients with the lowest levels of BDNF, symptoms still lingered at follow-up. The results suggest that a test for BDNF levels, administered in the emergency room, could help stratify patients.

•Tau protein (MAPT) possible biomarker for traumatic brain injury . The formation and accumulation of misfolded protein aggregates composed of amyloid-beta (Aβ) and tau. APT is a neuronal protein that plays an important role in axonal stabilization, neuronal development, and neuronal polarity. MAPT release into the CSF and blood has been interpreted as indicative of axonal injury.

It is believed that this biomarker may prove helpful in identifying high-risk patients with mTBI. However, additional studies are needed to establish the diagnostic value of serum tau in detecting traumatic brain injury in patients with mTBI.

(all information compiled from various sources)

Your Life Is the Miracle

I am grateful for so much.  The opportunities that life continues to give us to be together and grow as a family and as individuals.Miracleyouare

The last four years since the wreck have been crazy, intense, horrible, disappointing, amazing and life changing. We have had high highs and low lows.  There were times we didn’t know how we would make it to the next day, next week, or next month.

What we miss seeing at times is that we are all just passing time and occupy our chairs very briefly. We never know when that time will be altered. The time I have been given with my family is a gift.  We can let our experiences make us bitter or better.  We can be caught up in the darkness of our experiences or be guided by the light of strength, perseverance, and embrace the little miracles of the recovery process.

Some say we have had more than our share of loss. I see God’s light in my family every day. I may not understand the loss, pain, triumphs, and blessings – however I trust in the plan that is laid out for us and endeavor to accomplish as much as I can to live up to the gift I have been given by the miracle and grace of having survived so much.

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NEW STORIES – Matters of the Heart

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I am a Survivor trying to bring inspiration and awareness about Polytrauma and TBI to others.

33 Months ago, our Website Page for YOUR STORIES went LIVE.  Since then, we have met some amazing folks and had the opportunity to share their stories, experiences, and soulful expressions with all of you out there.

If you have not submitted your own story.  You can do that by starting HERE.

Survivors, Caregivers, Providers; Parents, family, or friends – share your story to be published on this site today.  We are glad to help you in any way we are capable.

We have recently finished Stories for various folks that we would like to share with you.  Take a look, read some, leave a comment at the bottom of their story if you choose, and pass the link on.

Let’s bring Global Awareness to Polytrauma and TBI
NEW SUBMISSIONS:        Murray Dunlap – Survivor
                                             Bobby Porter – Caregiver
                                        Jason Stockman – Survivor
                                             Tiffany McCullock – Survivor

Be A HOPEster!

WHAT IS A HOPEster?

A HOPEster is anyone who is interested in helping one person succeed to be independent – even if the person they are currently helping is themselves (specifically related to Polytrauma and Traumatic Brain Injury – though can apply to anything other than these two things as well).

A HOPEster is someone willing to share information, offer support (whether that be emotional, mental, physical, or just by sharing awareness information), and encourages advocacy (self-advocacy, medical advocacy, advocacy awareness).

A HOPEster is someone that thinks outside the box, is passionate, idealistic, and believes in the inherent goodness of others and our collective responsibility to each other as human beings.proud-to-be-a-hopester

https://hopetbi.com/awareness-matters/hope-tbi-awareness/

SPECT CT – Diagnosing and Treatment of TBI

As Science evolves, so should the diagnosis and treatment of Traumatic Brain Injuries.

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Check out our newly added Web Page:    SPECT CT

 

This is an important second test in settings where CT or MRI are negative after a closed head injury with post-injury neurological or psychiatric symptoms.

Medical Cornucopia

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So something amazing happened during the last four years, in my recovery process, and through countless hours of rehabilitation.  I discovered that with all my new normals, some things remain the same, some things about me are vastly different, and some things have become hugely magnified or what was once dormant is now renewed in a different way.  What I am referencing in this particular post is my absolute love and passionate interest in medicine, science, and all that entails.

I find I am at peace the most when learning new material in these topics.  This has been my “go to” coping mechanism since I was like 5 years old.  Medicine has always been my first love.  I have gone away from it, come back to it, gone away from it again.  Then when I was wondering just what I should be doing with my life and evaluating whether to have more children, where to take my career, enjoying my job

Some people cope and find their center of “grounding” by running, drinking alcohol, exercising, listening to music, playing video games, communing with nature, watching TV/movies, smoking, having sex, going to church, participating in artistic expression, etc.  Me?  I find that Medicine, specifically investigative Medicine or investigating medical issues is one of the things that brings me a sense or peace, a sense of purpose, a sense of clarity, a calm.

That being said, in this upside down world of taking back my life from this trauma and all the subsequent experiences since the wreck I was involved in….I find that researching my injuries, how to better my life, how to prove the science behind all the subjective, objective, developmental, and evolving facets of my recovery is how I cope.  It has served me well and helped me find the best care, catch the mistakes made by providers, celebrate the things done correctly by providers, find the best providers, realize that even amongst specialists, even the basics can be missed; it has validated many things for me. It continues to enlighten me about the realities of living a new life, and how best to go about it.

Proper diagnosis, proper treatment, and proper documentation cannot be ignored as being imperative and important when somebody endures any medical event or has persistent symptomology. Science is changing and evolving every day.  How small, tunnel visioned,  limited, and narrow minded we would be as patients, as providers, as attorneys, as caregivers, as case managers, as advocates to ignore the advances  in Medicine (both traditional and alternative) and not allow ourselves the freedom to continue to learn, to do no harm, to keep up with current trends, and to evolve into something greater, broader, and grow beyond our proverbial box of comfort?

This website is a part of my legacy.  My venture into baring myself openly to all of you who come across this page, who see these words, who read about these struggles, these triumphs. My attempt to help you find resources easier, should you need them.  At the very least, maybe understand how multi-faceted and life changing a Polytrauma and/or Traumatic Brain Injury can be.

That being said, if you come across a new article, a new treatment, a new study, a new idea, a new topic you want to see in these pages,  a revolutionary sytematic way of addressing recovery and rehabilitation, I would be honored to hear from you and thankful for you sharing what you have found……. with me.

If you have gotten this far down in this post….thanks for sticking it out and reading it.  Please share with others.  Feel free to leave comments below.  I actually read them!

Never give up HOPE!

 

Legal Monstrosity

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Hello Folks. I’m back on my blog. YAY!!! While I visit often, I have lots to share with you all, and have much medical information, numerous discoveries, and lots of additions to add to this site over the next several weeks. Now however, I am in a position to express my own personal views candidly and without fear of reprisal about something I have been wanting to for quite some time.

It has been a while since I have posted in my blog here. I wanted to explain that in addition to focusing on my rehabilitation goals, I was also embroiled in a fight for my life with the insurance company representing me in my Michigan NO FAULT claim.

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I had sued them for numerous items of service they were not paying on time/stopped paying under the laws that are supposed to, in theory, mandate and compel them to act in a judicious and timely fashion by the letter of those laws.

I, like so many other NO FAULT recipients, suffered additional and repeated traumas at the hands and manipulation of the Insurance Company(ies) that are supposed to be handling the various aspects of our NO FAULT claims. Instead, bills that they are supposed to pay in full, within 30 days of the bill being submitted to them (according to law); attendant care established through a prescription of a licensed physician ( for home health care, nursing care etc) provided by an agency or family member; medical mileage/travel supposed to be reimbursed after it has been incurred; replacement services (household services), wage loss, and other benefits afforded by Michigan law – they ignore &/or pay at their whim…not based on the actual laws. These laws are great on paper, for the constituents, yet there is no accountability for the Insurance companies to be mandated to actually follow the law on paper.

Did you know that the law States that the insurance companies can be charged “Interest” on any bill that is not paid within the 30 day time frame that it is submitted to the insurance company.

Again, this sounds good on paper, right? WRONG! Apparently the manipulation of that law is wholly accepted throughout the whole NO FAULT process as there are currently not any laws in place detailing when or how those interest payments must be paid AND making them non-negotiable items, or compelling them to actually be something the insurance company(ies) wish to avoid, because they would be required to pay that interest. It does not eliminate them from being negotiated away. They can only be charged this “interest” if you acquire an attorney, sue them, AND actually go through a trial where they can still negotiate out of that responsibility. The majority of cases go through a settlement procedure (like mine) and apparently that eliminates all possibility of them every having to pay interest on anything, that by law, they owe the interest on. This abhorrent process is just one of the many things that needs to be reformed in our NO FAULT system. Bottom line….if you don’t pay your bills within 30 days of receipt of that bill, you WILL incur interest for each day that is delayed. That interest should NOT be allowed to be negotiated away in Settlements, Trials, or other modalities regarding the NO FAULT process. This is a willful and purposeful choice they make, knowing there are no consequences. Holding them accountable, will, in theory, allow the NO FAULT system to do what it is supposed to do, take the burden off the individual who was actually in the wreck, so they can focus on their recovery. This would also take the burden off of the Courts being tied up in months or years of the back and forth legal ping pong that these Insurance Companies can afford to play. Reform should be attempting to compel the Insurance Company(ies) to do their jobs …..with our money.

The NO FAULT system through and through is a progressive, positive and integral part of our infrastructure in this State, absolutely worth saving and investing time and money in. It is a system to be envied by all other States and a model worth replicating. However, it is a system that needs transparency across the board, and accountability across the board as well though. After all, fraud and spuriousness is often propagated by the Insurance Company and their agent(s) themselves.

NO FAULT does require reform and clearer lines of accountability for all involved, but specifically the Insurance Providers themselves (obviously I feel this cannot be expressed enough). The very leviathan presence of these companies who with impudent disregard for the Courts, Judges, constituents, and laws voted on and enacted by the constituents (voting citizens) – often find themselves escaping their financial responsibilities, shirking the due diligence required of them, and using subterfuge and prevarication, knowing there is nothing to hold them accountable. Nothing at all. In my opinion, this is the grossest form of medical negligence, injustice, and sheer despicability.

That all being said, I have come to the end of this particular chapter of this grueling process through a Settlement process that was to say the least….less than desirable. Since physicianthe wreck I have literally fought for each breath, each step, each grip, each movement, each thought; each valuable, talented, progressive, and proficient providers; each benefit afforded to me by law, each opportunity to improve and have a decent quality of life. While not easy, while not always positive…absolutely necessary to survive.

I have endured countless days, weeks, months…and now years of acute/chronic pain, loss of body integrity, loss of social confidence, ongoing medical crises, and a complete change in my life, the way I live and relate to others and even relate to myself.

I have been made aware, through my personal experiences, of the dark side of the medical establishment that includes some incompetent white_coat_man_small_compressed_400x4008763830801952850647.jpgcolluding providers “in white coats and black hats (figuratively speaking)”, inaccurate medical documentation, missed/delayed labs, missed/delayed surgeries, missed injuries, delayed treatment,missed radiology exams, and the desperately fallible humanness of those we should be able to trust implicitly with our lives.

Despite all of this though….I have learned to advocate for myself on a different level. I have learned I AM a voice for those who are not able to be one for themselves. I have learned that we as a medical society are only just starting to learn about the miraculous processes that make us who we are.

I have learned who my true friends are or aren’t. I have learned that there is always a reason to HOPE and to never give up. I have learned that FAITH and LOVE really does prevail over darkness and injustice.

I have learned that every bit of essence that this blessing of a life has given me by the miraculous opportunity I have been given to survive is something to be protected and coveted. I have learned that sometimes being an honest, honorable, and sincere individual is sometimes just not enough. I have learned that discrimination comes in forms we don’t even talk about as a society. I have learned that I can endure more pain than I would have ever thought possible. I have learned that my life matters and I can find value in the person I am now. I am still learning how I can make a difference in this world and be a catalyst for positive changes and not compromise the core of who I am.

Finding the path to recovery is not just a journey….it is a pilgrimage. I will survive, despite continually traversing all of this Legal Monstrosity.

Thanks For Following HOPE TBI

I just wanted to thank those of you who have signed up on our email notification list here on our website http://www.hopetbi.com

I also want to thank you if you “liked” our page on Facebook and follow the Blog posts. It means a lot to me and hopefully what I write is helpful to you or someone you know in some small way.  If you haven’t liked our page on Facebook yet….now’s your chance.

HOPE TBI – FACEBOOK (FB) (online support and information Group)

HOPE TBI Co-Op and Exchange (donate items needed to others, acquire needed items  – no selling or vendors allowed here)

HOPE TBI – Facebook Page (we have a Facebook page; this is separate from the Support Group.  Remember to “LIKE” us on Facebook)

Follow us on Twitter: HOPE TBI (@hope_tbi)

Contact us:         hopetbi4ever@gmail.com

Remember to leave comments after you read an article, whether positive or negative. Your opinions are valuable and I welcome the feedback.

Help me bring awareness to Polytrauma and Traumatic Brain Injury….SHARE SHARE SHARE 😊

Love you guys muchly.  Never give up HOPE!!!

Hurtin’ for Certain

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Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions.   Examples are the following:

  • Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day.  On my worst days this creates a lot of fear and anxiety]

  • Heightened physiological arousal, such as tension, nervousness, irritability, startling easily, poor concentration, or poor sleep

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

  • Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful.  Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken.  Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas.  At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold.  What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now.  That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now.  I accept it as my new normal.  My new cloak of pain I have become accustomed to.  Chronic pain that some days holds me hostage from accomplishing what I desire.  That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body.  A polytrauma screws all that intuitiveness up.  Some days it’s hard to know what is up or down or sideways with where that chronic pain is located.  Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own.  My back aches, my feet intermittently get pins and needles.  My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day.  My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again.  My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun.  My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times.  Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this.  Of course, the trade-off  to taking on more responsibility is being more irritable, hurting more,  having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

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I am a whining mess as I type this as I so get tired of hurting and aching.  Here is the irony though.  I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well.  Any new flares that are not the new normal are seriously emotionally and physically exacerbating.  It’s like “seriously how much must I take”.  So the trauma continues and I remain….Hurtin’ for certain.

Emotional Lability – Web Page Update

Check out our latest Website Page – updated with additional relevant information.
You can find this under the “Rehabilitation Journey” Tab.  Then click the dropdown for “Emotional Lability”.
or go directly to page here:  Pseudobulbar Affect – Emotional Lability

 

 

 

Please consider leaving a comment under the article on our web page after you have read it.  We like to hear your feedback about what we are posting.  Thanks.

7 Mysteries of Polytrauma Exposed

 

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  1. Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space.  Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.anxiety

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances.  I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment.  There is a lot of planning that goes into getting out and about.  There are things to consider that I took for granted before the Polytrauma.  Checklists are my friend.  If I deviate from this process we have established, things do not go well at all.

Some days I do better than others.  I find I am able to be out longer and more often than even a year ago.  However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible.  Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards.  A one day trip could take several days to recover from.   A day of appointments could take a week to level out from again.  If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement.  Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

  1. Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general.  I wanted desperately for things at home to be normal.  Since the polytrauma I would feel emotionally and mentally….well…..flooded.  Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away.  In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me.  It is like there are too many sounds to sort out or too many thoughts to try and think at once.  I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out.  So we came to an agreement that if I said “Brain Time”  all things ceased no matter where we were.

Reset-ButtonIn the beginning  I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head.  No interruptions, no calls,  no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days.  I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still.  I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process.  I am learning to pace myself still and manage this more effectively.  This does not make for a great social life though, I will say that.

  1. Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere.  I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival.  When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable.  No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward.  The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

redTwo and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken.  I was horrified to find myself LOST after taking my kids to school.  In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before.  I used a GPS because it was like I had never been there before.  Now THAT made me feel coo-koo….I didn’t understand.  Then I got lost heading home.  I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed.  GPS became an absolute crutch.  As time has gone on, I have gotten better about figuring out my routes.  Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST.  I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS).  Most times he would answer the phone, sometimes  he didn’t hear it and I would be out there in a full blown panic.  I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me.  I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it.  I do not remember how I made it home in those elevated panic times.  What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room.  It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at.  If I forget I just turn on the GPS.  We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way).  So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma.  Oddly enough sometimes I get lost in my own neighborhood or kids’ schools.  If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

  1. Peat and Repeat Languaging – the way I communicated became annoying and complicated.  I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible.  When people would talk to me I had to have them look at me to hear them.  I found myself reading lips to understand what I was hearing, or thought I was hearing. Speech Bubble Indicates Speak Dialogue And Speaking If they turned their backs to me I would ask them to turn around and repeat what they said.  Some folks are super accommodating, some act put out by this.  Often times folks think you aren’t interested in listening or you do not care about what they said.  It wasn’t that, I just couldn’t process what they were saying.  Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes.  Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words.  This was maddening.   Oh!  if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey,  not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance.  I am a lot better about being vocal about it though with who I am speaking to now.  Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

  1. Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since.  I love words, their meanings, and expressing myself in a creative fashion.  I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed.  I couldn’t remember how to spell basic words.  I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch.  I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”.  I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

  1. Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together.  I could always tell when I was hungry, when I was full, and when I was snacky.

 

bonAfter the polytrauma I seemed to lose the ability to feel hunger or fullness.  For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general.  No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before.  My sense of taste and smell had changed.  Some of the things I enjoyed before now repulsed me.  Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation.  In fact, if I wasn’t brought my meals in those early months and sometimes  still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though.   More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before.  My family and I equally find this as quite bizarre.

  1. What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE.  More specifically FREEZING MY TUCHUS OFF!!!  I was always cold.  I couldn’t get warm, not even in the Summer months.  People would be sweating and I would be freezing and covered up with  my electric blanket and shaking from being so cold.  I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

jamaprintI have come to realize that my thyroid-pituitary-hypothalmus axis was way off.  My hormones were all over the place and apparently I rattled that temperature control  center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature.  At least now I can feel warmth eventually and not be as  cold.  Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down.  More often than not though, I still get cold.  Brrrrr’kin is what the kids call it.

So what temperature is it anyway?  I am probably not the most reliable person to                ask.  You might want to check outside…..then let me know.

 

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning.  If you are experiencing these things, you are not alone.  What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

 

 

Michigan No-Fault Insurance – Is It Worth the Fight?

The answer to that questions is quite simple for me.  it is a resounding and emphatic YES!!!

I am so eternally grateful for the No-Fault system. I sustained a Polytrauma which included multiple orthopedic fractures (5 in my spine alone, ribs, wrist, pelvis, scapula/shoulder, soft tissue injuries, nerve damage, and a traumatic brain injury).

Thanks to Auto No Fault I was able to have the necessary MULTIPLE xrays, CT Scans and lifesaving surgeries to help me survive. I had to go out of State to save the use of my arm due to a shattered scapula as we have no Trauma surgeons in Michigan who were trained to do that repair. Michigan No Fault made it possible for me not to lose all of the function in my right arm. My whole scapula and shoulder had to be rebuilt.

Medicaid and Medicare would NOT have covered this. We would have been stuck in months of pre-authorizations and appeals and I would have died.

I would have left behind my husband (who is also my provider so I could remain at home and not in a nursing home) 6 children, a mother, a brother, a
nephew, and other family. I would have lost the ability to advocate for others and to function at the level I currently function at.

My story would have ended tragically. My story, while yes, tragic and traumatic continues to be HOPEFUL due to Michigan Auto No Fault.

I WILL need surgeries in the future. It isnt IF….its WHEN. Auto No Fault provides me with the medical security to still be here for my children, and hopefully some day….their children.

Please, I implore all voting members to vote

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

You are literally investing in Michigan’s future and survival by voting to save lives and protect the communities you are pledged and voted in by your constituents to serve.

What do you want your legacy to be as a politician, as a fellow human being leaving their mark on this world???

Someone who saved lives and cuts costs by holding insurance companies accountable, or someone who sentenced thousands of men, women, and children to death and financial ruin?

You can be the implement of positive change. You can be a hero. You can be a HOPE’ster.

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

Thank you.

https://hopetbi.com/2017/05/29/be-a-hopester/

 

UPDATE: 11/2/2017

HB 5013 did not have enough votes to pass. This is great news for the whole State, but especially for the recipients of No-Fault benefits.

The Latest and Greatest

Check out our Updated “How You Can Help” page.

Don’t worry. This is not a fundraiser or request for funds page.

https://hopetbi.com/about-our-site/how-you-can-help/

Sound of Silence

Much like the Simon and Garfunkel song…well, back to that in a minute.

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So I have always been proud of my muti-tasking abilities throughout my life.  Being able to focus in many directions at once and deal with any level of noise without issues.  In fact, when I was much younger I used to go dancing and I loved bopping away and really enjoyed the techno beat of the music.  I used to be in marching band years ago, Jazz Band, Choir, Show Choir (kinda like Glee for those who have never heard of it) and let me tell you….you just get used to moving, spinning, dancing, and lots of noise.  I have always been a lover of music in almost all forms and preferred to listen to music almost all the time.

I loved going to football games, Image result for marching band competitionsporting events, and Pep Rally’s are an amazing memory.  As I grew into an older adult some of my music interests changed, yet I still held on to that love of music (which my parents would have probably argued on some days was noise to them).  When I worked in Emergency Medicine, I love the sound of the sirens, the pager going off, the squelch on the CB or radios, the multiple directions and decisions that had to be made to save a life.  I knew by their sounds whether it was “go time” or not.

When I met my husband I loved that he played the guitar.  My dad used to play all the time and we were a musical family growing up and I was quite ecstatic that I didn’t lose that with marriage.  When I became a mother I loved the sounds of my children.  All their sounds. From that first cry, to their first words, to their first debate/argument (yes – abhorred and loved at the same time too).  I was pretty good about being able to sort and filter out what I wanted to hear and didn’t want to hear merely by choosing…then remembering to finish what it was I was working on (which seemed to be everything all at once).  I could talk to more than one kid at a time, answer the phone, stir the dinner I was cooking, with music playing in the background….though admittedly it was often more than one type of music from more than one kid at a time as they listened to their “stuff”.  I loved my jobs.  I loved working and the business of it all and the multiple directions needed.  I was always felt I flourished in tight deadline and crisis situations in the workplace.  A lot of times, admittedly – in my younger years, my colleagues found me to be a little “too happy and cheerful”.  I heard that a lot.  What can I say……I really loved doing whatever it was I was doing at that time.

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There was also nothing more spectacular than going to a movie theater with the whole family and listening to the loud blaring beginning of that giant picture on the screen with each thunderous sound from one scene to another.  Now that is relaxing!

That is…..until the wreck.

I came out of that wreck different in a lot of ways I still continue to discover.   Some things about my personality became enhanced, some disappeared altogether, some new things cropped up that I have been unable to explain.  Some things about my tolerance, patience, general mood, ability to withstand hearing things in the same way and do things in the same way changed dramatically.  The way I thought about things, processed things, felt things, literally EVERYTHING became like I was experiencing them for the first time……or even worse, not at all. I do not dance anymore.  I do not multi-task like I used to, and I do not hear like I used to.Image result for noise

I honestly could not stand noise in any form for a while.  Literally, nothing.  Just the sound of the nurse’s feet walking in the room and the scuffing of their shoes was overwhelming.  The door opening and closing, the beeping and whirring sound of the blood pressure cuff, the constant talking in the hallway, the toilet flushing, people always asking me questions I couldn’t understand or I would answer quickly in the hopes they would soon just be quiet.  My memories of the hospital are in and out.  I remember voices and feelings more than I remember faces, names, or the day to day stuff that went on.  I remember pain.  Lots of pain.  I was dizzy, head a constant headache, and nope….no music thank you.  I also noticed I had a problem with how horribly bright it was everywhere.  When they would turn down the lights it was delicious and relieving.  Even the red lights from the monitor would hurt my eyes.  Those little night lights built into the wall at hospitals….nope, not my friend.

Then I went home.  Things were so different.  The house looked different as we pulled in the driveway.  The sound of the van door shutting, the leaves blowing, the clunk of the wheelchair, the shushing of the adults to the kids as I made my way inside.  The days that followed brought lots of appointments and a constant assault on my head, my eyes,  and my ears.  On top of it all I could “hear” the crunching of my shattered scapula moving with each therapeutic effort.  I could hear a high pitch tone that never seemed to go away for the longest time.  It almost sounded like a dog whistle or a fine squealing.  It was awful.  I noticed that while I had this going on, it sounded kind of muffled at the same time and it became difficult for me to focus on words, sounds, and more than one noise, or more than one person talking at a time was enough to send me into tears.

As time passed I noticed it helped if I read Image result for reading lipspeople’s lips to understand what they were saying.  Sometimes still I will see lips moving, know they are talking, yet understand NOTHING. I have learned to ask for repetition a lot.  Sometimes I just act like I know what they said….nod….and smile.  I learned little tricks, like wearing earplugs, sunglasses, carrying a blanket to cover my head with, lots of those types of things to cocoon myself from the auditory assaults of whatever environment I was in.

Eventually it just became easier to be at home where it was supposed to be peaceful.  However, we are a big noisy family. So that was not to be for me.  My family tried….hard in fact, to keep things quiet.  It seemed unfair to them.  However I was grateful for their attempts to cater to my newfound love of absolute quiet.  My bedroom became my safe zone.

Time has passed. Things keep changing.  Some though remain the same. Things are a bit better now.  I can stand being in outside more often than not. I can handle the lights in the grocery store on most days.   I do notice that my intolerance for noise seems to increase along with my intolerance for light. I startle quite easily some days, not so much on others….which causes ridiculous amounts of anxiety which can trigger some really unique reactions.

Nowadays, I am listening to music more often.  I still am not able to listen to it every day and some days not at all as it is too much to process if I am doing something else….like ohhhh sayyyyy….driving!  Just this week I was travelling down the highway and it was nice out so I thought I would roll down my window.  Just the sound of that gush of wind was too much for my brain to handle. I couldn’t roll up the window fast enough.  Other days I can have it down without incident.

I notice that when I am feeling flooded or overwhelmedImage result for fatigue or in the throws of a very neuro fatiguing day or situation (driving can be very neuro fatiguing by the way) – just having the window down and the wind in my ear seems like it is TOO MUCH.  Those are the days I just cannot seem to wait to get home.

Now 3.5 years later here I am.  Hearing loss in my left ear due to the damage from the traumatic brain injury.  Progressing with my vision therapy which has helped in more ways than I can begin to mention here.  Still reading lips, and an overcast day is a breath of fresh air for my eyes as it is not so bright.  Though I try to avoid driving too much at night as there are more lights than I remember being aware of before….there are a few things that everyone who knows me well….knows for sure – talk to me one person at a time; one task at a time; if I didn’t answer you chances are I didn’t hear you; if I tell you I need quiet and I cannot take any more I really mean that; and if I am having a rough brain day and need that beautiful bit of immediate solitude….

Ah yes, where I started this post from; like the lines from that Simon and Garfunkel song …..”No one dare disturb the Sound of Silence”

Image result for dare disturb the sound of silence

Polytrauma – The Ripple Effect

rippledefinition

There is a chain of events that happens with an auto accident that involves serious injuries, polytrauma, or death.  rippleA ripple effect that swirls and snatches and seeks to destroy not just the patient, but the family, the spouse, and friendships of that patient as well.

First, there is the initial accident.  This not only causes the injuries, but causes a multitude of mental stressors as well.  Fear, anger, shock, disbelief, numbness, sadness, enormous helplessness and grief.  If the person survives there are things that help relieve those stressors – such as gratefulness, happiness, apprehension, confusion, hope, and for some, a distinct solidification of their spiritual base.

The stressor for the patient is that the accident itself has happened to begin with; thus causing a multitude of injuries that may affect more than one aspect of their life. They may have memory and cognitive issues in addition to orthopedic injuries.  They may have behavior changes and appear to be a different person than they were before the auto accident.

The person may or may not have support and help from a trusted circle of family or friends as they fight to survive, exist, and recuperate. After a while though, often times, friends disappear.  Sometimes, the burden is too big to understand or absorb for family as well. A catastrophic injury absolutely shows you the genuineness of the people around you. Life continues to move on without you and you become acutely aware of this.  The relatives, coworkers, friends who were supportive at first…eventually go about their lives and forget that you are there….still struggling.  The patient is left circling in the same spot, sometimes for months at a time.

Every stressful event that happens AFTER the accident compounds and slows the recovery process and adds to the mental and emotional stressors in the patient and their relationships with others.  PTSDAny delayed treatments, or misdiagnoses, or haggling over care of the patient (whether by the family or the patient themselves) causes additional added stressors, which impacts the ability to heal in a timely fashion.

Something not often talked about or studied is the real impact that Polytrauma and Traumatic Brain Injury has on the spouse or children of the patient.  There are changes that happen in those relationships.  The household dynamics may change significantly leaving the family feeling disorganized and broken.

Children may feel insecure, may blame themselves, feel helpless and hopeless about their parent’s recovery or their parent’s relationship.  They may act out in ways they did not used to.  They may regress in their development, they may become isolated or clingy. They may try to act in a parental role with siblings themselves.

Child trauma

They may find ways to cope that are not healthy.  Some kids are able to adjust to the changes going on with their parents with lots of support, education, explanation, and patience. Some are not able to adjust.  Sometimes the injured parent is too different for them to understand. Sometimes witnessing the changes in their parent is too painful.  Sometimes a spouse or child can incur secondary trauma/PTSD as their loved one recovers.

The dynamics in a marriage are also hit with one wave after another depending on the level of injuries a patient has and how severe they are.  In a polytrauma or with a traumatic brain injury, often times spouses are forced to take on the previous responsibilities of the patient (household duties, scheduling, transportation, budgeting, cooking, cleaning).  This may overwhelm the spouse if they previously depended on their now injured spouse to handle those responsibilities.  Compassionn FatigueThe financial stress will compound quickly.  The person injured, if a working parent, may be unable to return to work for a period of time…if ever.  This creates a massive financial dynamic shift for the whole family.   If insurance is not available, or does not cover all of the medical bill this can spell financial ruin for a family.  Not many individuals or families are in a financial position to endure a catastrophic injury/event.  This is only compounded when the parent that is left working loses their employment because they are taking too much time off work to care for their spouse/family member.  This can exponentially compound the stressors in the household.

Even the kids can be affected by the financial changes both directly and indirectly.  A family may have to go to food banks, acquire assistance from agencies for bills, food, utilities, transportation, etc.  Some may end up losing their homes and become homeless.  This is a dynamic ripple affect that goes beyond the initial injury at the time of the accident.  This ripple affect can continue for weeks, months, or years.

Brain injury often brings on drastic personality changes, which may include irritability, depression, limited awareness of injury-related changes, and argumentativeness.

never the same

Some spouses may feel like they are married to a stranger.

They become concerned about whether their spouse will ever be the same again.  The reality is, they will not.

 

The working spouse may feel alone in the marriage or like a single parent (if they have kids) due to the inability of the patient to take on the same responsibilities and roles as before.  The non-injured spouse may also lose their marital benefits for an undetermined amount of time.  The loss of a partner that they previously shared comfort, affection, mental support, and did activities with. This can put another layer of strain on the marriage, which is now no longer, a normal marriage.brokenheart

While most people, in an ideal environment without financial devastation and strong support systems in place, progress in their healing over time in a seemingly more timely fashion;  a patient with all these added stressors can actually see a delay or lengthening of their recovery period, an exacerbation of some of their symptoms and the real potential for more permanent disabilities.  Some patients may even develop mental health challenges in relationship to adjusting to their life of “new normals”. Coming to grips (acceptance) of their injuries, limitations, and the domino affect of seeming losses from their injuries, can be crippling and make the patient and their caregiver feel isolated and in a constant “survival mode” state.

The team in place to help the person recover should absolutely include their providers, and include the insurance company handling their claims as well.  Any delays or standoffs regarding reasonable and necessary patient care only seeks to elongate and sabotage the patient’s recovery and future progress.

The ripple affect continues.  The waves of pain also continue, yet the tsunami of numerous medical appointments lessen as time goes on.  The relationships the patient is left with will continue to shape the shores of their life as they now know it.   Some relationships will erode over time, some will get swept away by the current of recurrent trauma’s, some will stand the test of time and hold strong and true.

These moments.  The moments that are not measured by the number of breaths we take, but rather the moments that take our breath away are the ones that leave us grateful for being able to wake up to the ripple of a brand new day.

Fresh bamboo leaves over water

Crisis Text Line

FREE 24/7 support for people in Crisis.
 
Text 741741 from anywhere in the USA to text w/ a trained Crisis Counselor
 

WebSite Page Update – Scapula Nonunion

Check out our newly updated webpage about scapula fractures and shoulder injuries from trauma.

SHOULDER INJURIES FROM TRAUMA –  SCAPULA NONUNION

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Quote of The Week

“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.”

~ Hunter Patch Adams

Flail Chest and Rib Plating

Check out our latest Web Page addition. “Flail Chest and Rib Plating”

Caren Robinson - Pics PreSurgery 3

      

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Vision and Sensory Center

Vision and Sensory Center – Cutting edge of current science and treatment of traumatic brain injuries.

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